“It’s just one night. It’ll be fine,” my husband, Todd, said after his night caregiver contacted me late one evening to explain she was dealing with a family emergency. Todd is paralyzed from ALS and needs to be turned and have his limbs adjusted throughout the night. It was…
People with amyotrophic lateral sclerosis (ALS) have significantly higher blood levels of lead, a toxic heavy metal, than those without the disease, a review study found. While the findings strengthen accumulating evidence of a link between lead exposure and the risk of developing ALS, they do not definitively prove…
Sometimes we all need a little help deciding whether to do something. I know I certainly do. That’s when I rely on what I call my “ALS bumper stickers.” They’re the latest addition to my ALS stress toolkit. The toolkit is a collection of strategies I use to maintain…
Real-world use of Radicava (edaravone) significantly prolongs survival in amyotrophic lateral sclerosis (ALS) patients, with people in the U.S. on the therapy living about six months longer than those not on this treatment, an analysis of Radicava’s use in clinical settings reported. The estimated probability of survival was greater…
A mutation in the STMN2 gene that consists of an excessive repeat of two nucleotides, the building blocks of DNA, is not associated with the greater risk of amyotrophic lateral sclerosis (ALS), a new study reported. Its findings contradict previous research suggesting a link between this particular mutation and ALS. “Although the…
Months after my husband, Todd, was diagnosed with ALS, our church’s worship leader asked us to participate in a Sunday morning service with “Cardboard Testimonies.” We watched an example on YouTube in which music played while people stood in front of the congregation and shared their stories. Presenters didn’t…
A protein called NOVA1 may be involved in the early disruption of protein production in amyotrophic lateral sclerosis (ALS), even before the characteristic buildup of the toxic TDP-43 protein occurs. The finding is a step toward identifying ways to treat the disease in its earlier stages, before nerve cells…
As part of its Tribute Awards, the Muscular Dystrophy Association (MDA) will honor Alan Pestronk, MD, co-director of the MDA & ALS Care Center at Washington University School of Medicine. The Tribute Awards recognizes those “who have been tireless in their efforts” to support members of the neuromuscular disease…
I remember those days when it was hard to get out of the house with our newborns. Two weeks after our daughter was born, my husband, Todd, and I celebrated Valentine’s Day with dinner at home. Todd bought jewelry for both Sara and me. Life has patterns and seasons, and…
NeuroSense Therapeutics has joined EverythingALS’s open innovation consortium to accelerate the development of treatments for amyotrophic lateral sclerosis (ALS). NeuroSense will provide financial support for ongoing research projects from the patient-focused nonprofit organization, such as those that seek to identify biological and digital biomarkers to help detect and monitor ALS.
